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I wish we knew more — this is an area worthy of further research. I agree that dysuatonomia is only part of the picture. My life would be much better if I felt throughout the day how I do in the evenings. It's interesting that both ME and POTS/OI follow this pattern in most patients.

I think it's best not to think of OI as a symptom. It is an umbrella term for a set of symptoms and conditions (e.g., POTS) that appear or worsen with upright posture. I think we know that this is due to problems with the autonomic nervous system—that is, OI is a form of dysautonomia. There...

I should go to bed, because this has really wound me up: A whole study on symptom exacerbation/fluctuations in LC and, as far as I can tell, they've avoided any mention of ME/CFS or PEM (or related terms).

I'm not a clinician but I think an option for Observational Study might be worthwhile. I think this would be classed as such.

This is quite a bizzare comment piece, given that neither of the phrases 'myalgic encephalomyeltitis', 'chronic fatigue syndrome', or 'post-exertional malaise' appears in the study. Also, with regards to this thread heading, I'm not sure this is a Trial Report, unless I'm missing something.

I would search for 'meal prep' services. You'll likely need someone working from home on a small scale. They often cater for people on diets due to exercise/fitness regimes.

"I have not mentioned fatigue. People with ME/CFS say they do not have fatigue in its usual sense(s). People with renal failure or rheumatoid disease with fatigue do not ‘crash’. Moreover, fatigue associated with most conditions is often best relieved by sitting in a comfortable, but upright...

Thanks Andy

Hi Jonathan. Can you—or perhaps someone else—please upload a PDF version? Cheers.

Yeah I'm pretty sure there are strong links between all four. Carson has had peripheral involvement with ME/CFS.

Sometimes feels like Carson & Stone are the new Wessely & Sharpe. Is history repeating?

Can others access this? The page won't load for me. I've been having problems with archive.ph recently and wondering if it's the same for others.

Will try and share something soon.

Along with the known issues with NHS care and the Delivery Plan (which the NHS seems to have swallowed whole), I am very concerned about the research landscape. We're in a very bad situation. There are currently only two biomedical ME/CFS projects funded by government: DecodeME and a project on...

This seems totally unevidenced. Not the sort of thing that should be in a module like this. Also, FND doesn't look like ME/CFS if you know anything about the two conditions. I don't think that should be in either.

I'm not going to vote in this because the gap in my case is slightly different. I had a bout of acute stress in April/May 2012 and seemed to have some sort of virus—sore throat etc. Was prescribed penicillin V, probably wrongly. From then on I had mild fatigue, tinnitus, and lots of...

I believe this module is general education and basic management stuff for primary care staff. I don't think David Strain should be writing this. Also, it doesn't look like there's been adequate co-production.

These advocacy projects seem a little archaic to me. I can imagine these will unfortunately go straight in the bin at some practices. EDIT: The plasma screen rental is probably a better idea so I hope that pays off.

It's not really my place to tell Katie what to do. I don't know her, I just responded to her X thread the other day and we had a chat via DM. It would be helpful if one of the other patient reps reached out to her.

Hi Joan, Are you in the Education group? Katie Johnstone, one of the patient reps in this group, is now thinking of not providing any feedback to this Module 2 document, even though there are clear issues with it. She does not feel heard, and thus is not sure whether she'll actually provide...